This update is a bit delayed. I would love to say everything is great but that would be a lie. There is nothing fun about what our baby boy and our family are going through. However, we believe it is for a cure. We strive to keep a positive attitude. We also are aware we are not the only ones going through this as we meet new families every day going through something similar. Additionally, so many have reached out who have survivors and that means EVERYTHING.
How is Tristan doing? Well, he’s now day 21 of induction chemotherapy. (He was admitted about a week before chemo started). What does this mean? Chemotherapy is a 32 day Induction cycle after your diagnosis. This is common treatment for most child leukemias and adult leukemias. We hit the jackpot (sarcasm purposeful) and our baby boy has Chronic Myeloid Leukemia with B cell acute lymphoblastic leukemia. Only 1 percent of people get this. The plan is to treat the acute leukemia while treating the chronic.
Our baby boy (who is a teen, turned 15 a week before his admission).
Well….I wish I was given a clearer picture of what our son and our family were to face. Needless to say, I’m going to write a book someday when we survive this ..to help others navigate the scary waters of cancer. From day 1 I knew my husband and I needed to divide and conquer. We take turns coming to Boston Children’s Hospital. We have a bed next to Tristans and rarely leave his side. We have found a few friends at the Longwood inn, especially the kind bartender Justin. Getting out for a short time helps us recharge. The hospital has a family center and they offer care giver massages which are so helpful. They have a roof top deck on the 11th floor where we can seek fresh air (though Tristan can’t go outside). The mealtrain is helpful because my hubby and I are like two ships passing. We don’t have time to grocery shop. I am working a few days a week and when not working I’m at the hospital. Matt is navigating all the paperwork, logistics and still helping me manage my practice remotely. My amazing staff have continued to run my practice smoothly and expertly which is huge. When I do work, I love reconnecting with all my clients and staff who mean the world to me.
By day 12 Tristan became so weak he couldn’t walk to bathroom independently. He became constantly nauseous with abdominal cramping. We asked for a chart of chemo meds, but it didn’t prepare us for the side effects. He started having diarrhea from the onset of meds. He became so weak he fell this past Monday. Luckily he suffered only a small injury to his bum and knee. Now he can’t walk. We must remind him to call us every time he needs to go to the bathroom. We have a bedside commode. We must help him transfer. What is it like for us? It is like having a newborn. We sleep when he sleeps, we attend to his needs when he calls. We are afraid he is going to fall. Some nights we get no sleep due to constant vital signs, meds etc. We advocate for staff to clump care so he/we can get some sleep. He has developed mucositis which are mouth sores. This is common from the medication. He has had low sodium (hyponatremia) with SIADH which causes chronic dizziness, so this is NO fun for him. We are trying hard to keep him out of the ICU b/c he has poor nutrition and is having a hard time ingesting his medications. Nothing like being asked to take salt tablets and pills when your dizzy, stomach hurts and your nauseous! Thank God I’m a heath care provider so I’ve been able to get the important things in him while maximizing his calories. He is too weak to shower so we do bed baths and special wipes to help prevent infection.
His hair started falling out in clumps so I had to cut it. That was hard. I saved locks for Matt and I.
He’s had another Lumbar puncture with intra thecal chemo this past Thursday (this was his second LP). He will get another LP with chemo and another bone marrow biopsy in two weeks. We pray that this biopsy will show is in remission. If he is, he may be able to go home for two weeks (if he is strong enough). We are so grateful for Don Mcgill and company who are redoing two bathrooms in our home to make it safe for Tristan when he can come. We need to add shower bars, make sure no mold etc. We will need commode and possibly other modalities to get him home. We are working with social work, many cancer organizations to determine ways to get the help we need. The go fund me has been huge, as we can use for expenses (which are many) which continue to pop up in his care.
He will then be hospitalized for “conditioning chemo” and get a bunch of tests preparing him for bone marrow transplant (not stem cell). I, Matt and our older son swabbed to see if we are a match. We are praying for a complete match which will make Tristan’s chances of doing well higher. If we aren’t a match then they will look at the national bank. I encourage people to donate blood and or/swab for marrow match. It might not help our son; however, it will help many others that are in need. These donations save lives. Tristan needed a blood transfusion overnight.
Our older son just had his 17 th birthday and unfortunately, we couldn’t celebrate all together. We hope to celebrate when my sister comes to visit. This has been physically and emotionally demanding however, we realize this isn’t forever.
He is receiving amazing care from the entire team at Boston Children’s Hospital. He gets physical therapy during the week. We are trying to keep him strong physically and emotionally. He is too weak to play games; however, when he’s awake we watch fun tv shows together. We massage his feet/legs/hands and put cool compresses on his forehead and neck to sooth him.
The outpouring of strength, support, donations, gifts, cards and overall love from you all has been amazing. We read every comment, though we are often to overwhelmed to respond. The amount of success stories we have heard from people all over the world has been inspirational. We try to appreciate every small win, such as Tristan sitting up in a chair for an hour. Yes, unfortunately he is suffering, but the staff and his family are there by his side to mitigate and advocate for him every step of the way. His spirits are on the low side because he is tired of all the meds, all the tummy issues and lack of sleep. However, we are and will continue to be his cheerleaders. We are filled with hope that this is all for a cure!!! He is not up for visitors right now but when he can have them we will let people now. Once he gets his BMT he will only be able to be with immediate family inside. More on that later….Let’s take it day by day!
I’ve made good friends with a mom whose son got to go home a week ago and it’s so encouraging to hear how well kids bounce back. I am the support for the new parents that show up here. Stay tuned for more updates and thank you again for all your encouragement. LOVE YOU!!!